Tracy Pratt

A breast cancer drug that could extend the lives of hundreds of women is being withheld from the NHS in an escalation of a pricing row with the pharmaceutical industry ⬇️ #Echobox=1756016958" target="_blank" rel="nofollow noopener">thetimes.com/uk/healthcare/…

@sophieRblake Thank you @sophieRblake and to all those involved in your tireless hard work and determination xx

We did it! Thank you to all the MPs who listened to the voices of terminally ill people who want choice at the end life. They have been left to suffer for far too long

Busy Living with Mets or on our knees waiting for the next treatment line... The public view of Metastatic Breast Cancer is more important than many realise - especially when it comes to campaigning for access to treatment, better interventions, and even practical matters like benefits and support. MBC patients are treading a fine line: needing to be “well enough” to be worth funding for extended survival, while also being “ill enough” to justify that spend. But MBC isn’t linear. One day we’re active, the next we’re in bed. One chemo can wipe out days; another allows someone to work through. Many of you will have heard us talk about the ‘severity modifier’ - especially during our campaign for Enhertu for HER2low. Because MBC doesn’t meet the current ‘high severity’ criteria, treatments can be denied. Too well, and we don’t qualify. Too unwell, and we’re deemed not worth it. A catch-22. Patients are still contributing to society, parenting, working, campaigning. Yet the median life expectancy is just 2–3 years. That sounds pretty ‘severe’ to us. #BusyLivingWithMets #Stage4NeedsMore #METUPUK #DrugAccess #MetastaticBreastCancer #SecondaryBreastCancer #PatientVoice

📢 Amazing news! NICE has recommended capivasertib with fulvestrant for use on the NHS in England – offering certain people with HR-positive secondary breast cancer a new targeted treatment option. breastcancernow.org/about-us/media…

METUPUK is delighted that the drug combination capivasertib plus fulvestrant has been recommended by NICE for patients with oestrogen receptor positive metastatic breast cancer who: · have progressed on hormonal treatment · have one or more PIK3CA, AKT1 or PTEN gene alterations Capivasertib with fulvestrant is a promising drug combination which can double the length of time patients have before cancer comes back. Capivasertib is also the first drug available to inhibit AKT, a molecule which drives cancer cell growth. The Institute of Cancer Research in London had a pivotal role in the development of capivasertib. This began with unravelling the role that AKT has in cancer biology, and then working with a UK bioscience company to develop prototype drugs which could inhibit AKT. These drugs were then refined leading to the creation of the final drug capivasertib which has now been made available to patients. The process took around 25 years, beginning in the year 2000. It is always encouraging to see cancer research leading to drugs which are available to patients. However, capivasertib with fulvestrant is not a cure for metastatic breast cancer. Until the statistic of 31 women dying every day in the UK from metastatic breast cancer is no more, we at METUPUK will carry on advocating for patients. We urge the SMC to evaluate capivasertib with fulvestrant without delay. In Scotland there are no drugs available which target PIK3CA, AKT1 or PTEN gene alterations. Postcode lotteries are divisive and distressing for patients. Improved drug access allows us to stay #BusyLivingWithMets and increase our survival outcomes. We Demand Change. #drugapproval #DarkerPink #BusyLivingWithMets #IAmThe31 #DyingForACure #MetastaticBreastCancer #severitymodifier #SecondaryBreastCancer #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

The SHOCKING Truth about Turmeric and Breast Cancer youtu.be/LqYG_sArBb4?si… via @YouTube

“Your mummy loves you forever fund” 🩷 This is beautiful Hannah, my fellow Enhertu campaigner and an amazing woman, who has Stage 4 incurable cancer. Her dying wish is that her 4 year old daughter Lilah, who has complex needs, can be taken care of. Please support this GoFundMe by donating or sharing – every bit of help makes a difference Thank you 🩷 gofund.me/0a28f11

For Lilah 🩷 Please share and donate if you can X gofundme.com/f/hannahs-gift…

@Make2ndsCount I’m on the BLUESTAR trial run by @AstraZeneca at the nothing to do with having limited options but all to do with it being the right time in my treatment journey

"I thought trials were for people who had limited options but the Clinical Trials Service has opened my eyes to what else could be available to me & given me hope." - Kelly Speak to our Nurse Mel to see how trials could be part of your treatment pathway: make2ndscount.co.uk/support/clinic…

@abcdiagnosis Totally agree @abcdiagnosis

I wonder if any of these patients had any support with #physicalactivity to help with #fatigue (different to feeling tired) or did they continue PA or anyone starting PA to help themselves? I know it has helped me - it seems counter productive but it works #ESMO22

Secondary breast cancer (SBC) can be referred to in a number of ways, which can be confusing. They all mean the same. SBC is a cancer that has spread beyond the breast to other parts of the body. Find out more & how we support those living with it: make2ndscount.co.uk

@sophieRblake I’ve used them ever since my secondary diagnosis too and they have always given me a great quote

So many people ask me who I get my specialist travel insurance through, so here’s their link. (Not an Ad) When I was first diagnosed with Stage 4 Cancer the quotes I received, even just for a weekend away, were astronomical. Travelling has always been a huge passion of mine and I was devastated to think that I wouldn’t be able to tick places off my ever growing living list! 😁 Fortunately someone recommended “Insurance With” a specialist medical company who I’ve been using ever since. Thanks to them I’ve been able to have more cherished adventures with my daughter, family and friends ⬇️ insurancewith.com/?utm_source=go…

@sophieRblake It so very sad @sophieRblake 💔

Another beautiful soul lost to secondary Stage 4 breast cancer. Sukhy and I were both diagnosed in 2022. She radiated joy, was so open and honest about her treatments whilst raising awareness of metastatic breast cancer and had wicked sense of humour! We often discussed living with cancer as single parents and my heartbreaks for her children. Sending all my love to her family and friends ❤️

Today is Rare Disease Day. Those who know me understand Joshua has an ultra rare genetic mutation in ATP1A3. Today was a day to feel the sun on my face and take a breath. We live with uncertainty every day and this takes on a huge toll on us as a family. #RareDiseaseDay

@emmawalters28 A beautiful day to take a breath and reflect. You are an amazing family and Josh has flourished in the way he has because of you all xx

@charliersmith1 Love the photo. You look so happy xx

Since sharing this photo yesterday, I’ve been subject to some pretty horrible comments about my appearance and weight. I contemplated deleting it. But instead, I’ve decided to post it again to show I’m not ashamed of my body!! 😃

@METUPUKorg Thank you for all your work on this important issue. Robust data should be driving decisions re treatment pathways etc Can we find out from @NAoMe_news which Trusts are contributing to this data?

Today is our last day of #MBCDataWeek which looked at some of the very early work coming out of the NAoMe work to hopefully finally enable the identification of MBC data, treatment and interventions in NHS data sets. At the highest level, our aim as MBC patients is still ‘stuck’ at step one; needing to be counted. De Novo is the only data being reported robustly so far, but sadly that’s only around 5-10% of all MBC patients. Until the NHS is able to accurately identify all living with Metastatic/Secondary Breast Cancer we can’t proceed to more fine-grained data improvements around sub types, diagnostic and drug interventions, measuring outcomes and identifying areas for improvement. Thank you for all of the questions and feedback we have received this week. We will be passing this back to the NAoMe team for follow up. In terms of actions for us, on behalf of all MBC patients, we will be seeking: - Greater clarification for patients on what the expected timeline is for resolution of identifying recurrent MBC patients (the majority of MBC patients). - What action are Trusts obliged to take to improve their data recording and how can patients understand what is happening locally in their area. NAoMe asking patients ‘to ask if they are being counted’ is too simplistic. They might be on an excel spreadsheet maintained by the MBC clinical nurse specialist in their Trust but that is not the same as data being accurately recorded in NHS systems used nationality. - What are the consequences for lack of action by a Trust. As data collection has been mandatory for over 10 years and it hasn’t been done, what is different now? - Clarification on the objective to report on patients dying within 30 days of chemo. Is the aim to not treat patients that closely to death, if so, will this have implications on access to treatment. This can be particularly important for younger patients who can transition from successful treatment to end of life quickly. - How long does the audit continue for and will the work be handed over to the NHS data organisations in England and Wales to continue to be produced/reports, maintain completeness and add further improvements such as type of breast cancer. - Can the NAoMe audit do ‘lives’ on socials in order for patients to ask questions (we are going to talk to @breastcancernow about organising this with us when the next State of the Nation Report is released. Please do get in touch on socials if you have a question about NAoMe that you would like put to the audit team. #MBCdata #NAoMe #NATCAN #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

@METUPUKorg My oncologist discussed biopsy at my MBC diagnosis and both times I’ve had progression but for different reasons it hasn’t been able to happen so we are working on the assumption that my type remains HR+ HER2low. I have been checked for mutations though

Our penultimate day for #MBCDataWeek and we are focusing on both biopsy and survival analysis that has come out of the NAoMe. Biopsies are something that METUPUK are passionate about educating patients. The number of women we’ve met who had poorer outcomes due to investigations not taking place when an MBC diagnosis happens. Not knowing if their MBC is HER2 or hormone driven, has additional genetic markers or has flipped again during the MBC pathway. From the small amount of recurrent MBC data that NAoMe is able to use, only 30% has a biopsy recorded. This information could not be derived for Wales in the data available. The site of the biopsy could also not be determined from the data available. It is an aspiration of the NAoMe that this analysis informs a target for biopsy of metastatic disease. We also want to explore with NAoMe if the biopsy data is only looking at diagnosis or whether recorded at each progression during MBC. The survival stats for de novo MBC were 70% 1 yr survival and 50% survival at 3 years after diagnosis (between 2019 and 2021). We don’t have breakdown by age or subtype at this stage and obviously no meaningful recurrent MBC data, which is the majority. Because this partly covers the pandemic period there may be unusual patterns. As the NAoME doesn’t include anyone diagnosed before 2015 across all of the analysis (which excludes a few of us at METUPUK), we will still be missing the full picture, particularly those who are long term survivors and analysis on what makes them so! NAoMe aims to report on survival rates by tumour type in future reports so watch this space. #MBCdata #NAoMe #NATCAN #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

@deathpod_ @KathyBurke Oh no….love @KathyBurke #WTAWTAW

Here Lies @KathyBurke It’s a sad day deathlings! Queen Kath is hanging up her death cloak BUT #WTAWTAW WILL go on (new host TBA). In the meantime, you'll get more Kathy with FREE 6FU eps in coming weeks Here's her message: listen.sonymusic-podcasts.link/BMCxpawy?at=10…

Had a great time last night watching @BillBailey on the last night of his show with @GaryPratt44 Lovely tribute to the great Sean Lock ❤️